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Compared with HIV-infected women who denied lipodystrophy, HIV-infected women with self-reported lipodystrophy demonstrated poor body image as measured by BIQLI p = 0.02 and SIBID-S scal

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Open Access

Research

Body image in women with HIV: a cross-sectional evaluation

Jeannie S Huang*1,2, Shawn Harrity3, Daniel Lee3, Karen Becerra1,

Address: 1 Department of Pediatrics, University of California, San Diego, California, USA, 2 Children's Hospital, San Diego, California, USA and

3 Department of Medicine, University of California, San Diego, California, USA

Email: Jeannie S Huang* - jshuang@ucsd.edu; Shawn Harrity - sharrity@ucsd.edu; Daniel Lee - dalee@ucsd.edu;

Karen Becerra - kbecerra@pedsmail.ucsd.edu; Rosanne Santos - rtsantos@ucsd.edu; W Christopher Mathews - cmathews@ucsd.edu

* Corresponding author

Abstract

Background: HIV lipodystrophy syndrome is a recognized complication of potent antiretroviral

therapy and is characterized by often dramatic changes in various body fat stores, both central and

peripheral Given prior findings of heightened body image dysphoria among HIV-infected men with

lipodystrophy as compared to HIV-infected men without lipodystrophy, we sought to determine

body image among HIV-infected and HIV-negative women and to determine the relationship of HIV

and lipodystrophy with body image Our a priori hypothesis was that women with HIV and

lipodystrophy would have significantly poorer body image as compared to women without HIV and

to women with HIV without lipodystrophy

Results: 116 women responded to two previously validated self-report instruments (Body Image

Quality of Life Index (BIQLI) and the Situational Inventory of Body-Image Dysphoria – Short Form

(SIBID-S)) on body image 62 (53% subjects) HIV-infected women were recruited at the

university-based HIV clinic 54 (47% subjects) HIV-negative female controls were recruited from another

study evaluating bone density in otherwise healthy controls 96% identified their sexual orientation

as women having sex with men Among the HIV-infected group, 36 reported the presence of

lipodystrophic characteristics and 26 reported no lipodystrophic changes Agreement regarding the

presence of lipodystrophy between physician and subject was 0.67 as measured by the kappa

coefficient of agreement Compared to HIV-negative women, HIV-positive women demonstrated

poor body image as measured by BIQLI (p = 0.0009) Compared with HIV-infected women who

denied lipodystrophy, HIV-infected women with self-reported lipodystrophy demonstrated poor

body image as measured by BIQLI (p = 0.02) and SIBID-S scales (p = 0.001)

Conclusion: We demonstrate that HIV and lipodystrophy status among women is associated with

poor body image Universal efforts should be made in the HIV medical community to recognize

body image issues particularly among persons affected by lipodystrophy so that appropriate

intervention and support may be provided

Background

Although HIV infection in the current era of highly active

antiretroviral therapy (HAART) has become a survivable and chronic condition, multi-drug regimens pose

signifi-Published: 06 July 2006

AIDS Research and Therapy 2006, 3:17 doi:10.1186/1742-6405-3-17

Received: 13 April 2006 Accepted: 06 July 2006 This article is available from: http://www.aidsrestherapy.com/content/3/1/17

© 2006 Huang et al; licensee BioMed Central Ltd.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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cant potential metabolic side effects HAART has been

associated with significant changes in body habitus in

many patients The HIV lipodystrophy syndrome

encom-passes two different patterns of changes in central and

peripheral body fat stores, both of which are associated

with specific antiretroviral agents Increased visceral

adi-posity, hypertrophy of the posterior cervical fat pad

("buf-falo hump") and increases in female breast fat is typically

associated with agents of the protease inhibitor class [1],

while subcutaneous fat atrophy of the extremities and face

have been described primarily with agents in the

nucleo-side reverse transcriptase inhibitor class[2]

Many studies have demonstrated impaired psychosocial

functioning in patients with the lipodystrophy syndrome

as well as a negative impact on their quality of life and

sex-ual behavior [3-7] We previously reported notable

differ-ences in body image measures among HIV-infected men

according to lipodystrophy status [8] Prior research

dem-onstrating notable gender differences in body image

per-ception [9-11] suggests that body image studies among

mixed male-female populations should control for gender

confounding of results or evaluate gender groups

sepa-rately In the current study, we investigated body image

among HIV-infected and HIV-negative women Our a

pri-ori hypothesis was that women with HIV infection would

have significantly worse body image dysphoria and lower

body image related quality of life as compared to

HIV-negative controls Similarly, we proposed that women

with HIV infection and lipodystrophy would have lower

body image as compared to HIV-infected women without

lipodystrophy

Results

Demographics

Ninety-seven percent of approached patients agreed to

participate, and one hundred and sixteen women

partici-pated in our survey study Sixty-two women were

HIV-positive Ethnic composition of the entire cohort was 34%

Hispanic, 10% black, 45% white, 8% Asian, 3% other

Demographic data are displayed in Table 1 There were no

differences in age or sexual orientation according to HIV

status; however, there was less Caucasian representation

among the infected population as compared to

HIV-negative control (p = 0.01) Among HIV-infected women,

median CD4 count was higher (p = 0.02) and median HIV

viral load (p = 0.003) was lower in women with

self-reported lipodystrophy, as compared to HIV-positive

women without lipodystrophy AIDS status did not differ

between HIV-positive groups (p = 0.48)

Lipodystrophy assessment results

Concordance between physician and self-determination

of lipodystrophy status among HIV-infected women was

substantial, as determined by the kappa coefficient of agreement (κ = 0.67)

Body image and HIV and lipodystrophy status

HIV and self-reported lipodystrophy status were associ-ated with body image subscales (Table 1) HIV-positive women, particularly HIV-positive women with lipodys-trophy, had lower reported body image related quality of life scores compared to HIV-negative controls (p=0.0009) HIV-positive women with self-reported lipodystrophy reported higher body image dysphoria (SIBID-S scores) compared to HIV-positive women without lipodystrophy and HIV-negative women Compared with HIV-infected women who denied lipodystrophy, HIV-infected women with self-reported lipodystrophy demonstrated poor body image as measured by BIQLI (p=0.02) and SIBID-S scales (p=0.001)

Similarly, among HIV-positive women, physician rated lipodystrophy was significantly associated with both body image subscale scores Of the HIV-infected women, 38 women demonstrated clinical evidence of lipodystrophy;

24 did not HIV-positive women with clinical lipodystro-phy had significantly (p = 0.009) lower BIQLI scores (median (IQR): -0.7 (-1.2, 0.04)) as compared to HIV-infected women who did not have clinical lipodystrophy (0.2 (-0.7, 0.8) HIV-positive women with clinical lipod-ystrophy also reported higher SIBID-S scores as compared

to HIV-infected women without clinical lipodystrophy (2.3 (1.6, 2.8) vs 1.5 (0.5, 2.3), p = 0.005)

22% of HIV-infected women with self-reported lipodys-trophy as compared to 0% of HIV-infected women with-out lipodystrophy believed that others knew their HIV disease status based solely on their appearance (p = 0.003)

Among HIV-positive women, specific patient-reported lipodystrophy changes (i.e fat atrophy or hypertrophy) were also associated with body image scales (Table 2) In particular, fat changes at the face, neck, breasts, abdomen, and arms were significantly associated with SIBID-S scores according to pair wise comparisons between fat change groups and no change groups Only fat changes at the abdomen and breasts were significantly associated with BIQLI scores

Multiple linear regression analyses

Multiple linear regression analysis identified significant associations between HIV status and body changes caused

by chronic disease, and poor body image scores In partic-ular, positive HIV status was associated with lower body image related quality of life, and presence of body changes caused by any chronic disease was associated with greater body image dysphoria Results are displayed in Table 3

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Among the HIV-positive group, controlling for ethnicity,

multiple regression analyses were also performed to

deter-mine which site-specific patient-identified fat changes (as

identified by prior notable associations demonstrated on

pair-wise comparisons) predicted situational anxiety and

affected body image quality of life Significant

associa-tions between arm atrophy (reference = arm hypertrophy

or no change, β = -0.79, p = 0.003), leg atrophy (reference

= leg hypertrophy or no change, β = +0.69, p = 0.004), and

breast hypertrophy (reference = breast atrophy or no

change, β = -0.43, p = 0.03) and BIQLI scores were

identi-fied (whole model R2 = 0.32, p = 0.008) Likewise,

signif-icant associations were found between arm atrophy

(reference = arm hypertrophy or no change, β = +0.57, p =

0.009) and leg atrophy (reference = leg hypertrophy or no

change, β = -0.35, p = 0.07), and SIBID-S scores (whole

model R2 = 0.39, p = 0.0006)

Discussion

We performed an observational study among

HIV-infected and HIV-negative women to determine whether

HIV status and self-perceived lipodystrophy status affects

body image and quality of life Our findings suggest that

HIV status and somatic changes interpreted as

lipodystro-phy are associated with body image in women

Body image encompasses an individual's body-related

self-perceptions and self-attitudes, and is linked to self

esteem, interpersonal confidence, eating, exercise, and

grooming behaviors, sexual experiences, and emotional

stability [12,13] Diagnosis with a chronic disease can

have detrimental effects on self esteem and body image

[14] In our cohort, we demonstrate that diagnosis with HIV disease has a negative effect on body image related quality of life among women Alterations in body appear-ances can similarly have significant effects on psychoso-cial well-being and quality of life Evidence of negative interactions between body changes and body image has already been demonstrated in HIV-infected men with AIDS wasting [15] and with lipodystrophy [8] In this study, we also demonstrate evidence of detrimental con-sequences on body image measures (greater body dyspho-ria and lower body image related quality of life) among HIV-infected women who perceive that they manifest lipodystrophy body changes

Studies indicate that the typical Western society female prefers a thin body at all areas including chest, abdomen, and limbs [16-18] In accordance, our data demonstrated that reduction in leg fat and breast size was associated with improvements in body image measures However, regression modeling also suggested that reduction in arm fat was associated with greater body image dysphoria and lower body image related quality of life One possible explanation might be that loss of fat in the leg region increases definition of muscles and results in an apparent

"toned" appearance, while loss of fat in the arm region may lead to an atrophic appearance and suggestion of physical inactivity or lack of physical fitness Our findings

of increased desirability of fat reduction at the leg com-pared to the arm in Western culture is supported by sur-gery data from the United States demonstrating that the most common sites of liposuction are located at the leg (hip, thigh, knee, and calf) [19]

Table 1: Population Demographics

Entire Cohort HIV + with LipodystrophyΩ HIV+ without LipodystrophyΩ HIV-Control p-value **

HIV + with LipodystrophyΩ HIV + without LipodystrophyΩ p-value ▲

Log10 HIV viral load (copies/mL)* 2.6 (2.6, 2.8) 3.7 (2.6, 4.6) 0.003 ¥

*Expressed as median (interquartile range).

▲ Between HIV+ lipodystrophy vs HIV+ non-lipodystrophy groups.

**Statistical comparisons among all 3 groups.

ΩAs reported by the patient.

¥ p-value by Kruskal-Wallis rank sum test.

Σp-value by chi-square statistics.

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Some studies have demonstrated differences in how

women of color view their bodies in comparison to

Cau-casian women [20] However, a recent study evaluating

whether ethnicity predicted acceptance of higher body

weight among 801 women (24% Asian, 47% Hispanic,

16% black, 13% white) from a wide range of ages, body

weights, and educational backgrounds only found lower

body dissatisfaction among Asian women as compared to

women of other ethnicities [21], verifying prior

investiga-tors' findings [22-24] Of note, there were no

demon-strated differences in body size ideals among Black,

Hispanic, and white, non-Hispanic women [21] Our

analyses similarly did not identify ethnicity (categorized

as white vs non-white) as a modifier of reported results

In our cohort, HIV-infected women with lipodystrophy

were more likely to feel that their HIV status was

discern-ible by their body changes as compared to HIV-infected

women without lipodystrophy We and others have

reported similar findings among other HIV-infected pop-ulations [8,25] Despite its increasing prevalence, HIV dis-ease remains a social stigma [26-30] The fear of HIV status discovery as revealed by overt body changes accom-panied by the shame and fear of discrimination associated with HIV disease [31-33]may thus explain the heightened body image dysphoria and lower quality of life among women with HIV lipodystrophy

Medication effects on the body and body image are often listed as reasons for non-adherence among consumers, and particularly female consumers [34] This is similarly true for HIV-infected patients, where lipodystrophy has been demonstrated to have a detrimental impact on med-ical compliance with antiretroviral therapy [35-37] In order to provide early intervention and perhaps improved outcome, routine body image screening procedures should be instituted to provide the clinician with a stand-ardized method to better understand the full spectrum of body image concerns that patients experience and to increase and improve communication between physician and patient In the setting of HIV infection, our findings suggest that body image concerns should be addressed and discussed between physician and patient when select-ing initial antiretroviral regimens

Interpretation of our results is subject to a number of lim-itations First, this was a cross-sectional evaluation As a result, we were not able to compare how lipodystrophy directly affects body image by assessing body image before and after somatic changes Second, what is referred

to as lipodystrophy syndrome is not a homogeneous entity and varies in severity Nevertheless, lipodystrophy status in our study was defined both by subject and physi-cian with good concordance, and regardless of the method of definition, HIV-infected women with lipodys-trophic changes were found to have significant heighten-ing of their situational anxiety regardheighten-ing their body and reduction in their body image related quality of life as compared to HIV-infected women without lipodystrophic changes However, by ascertaining lipodystrophy pres-ence in a binary fashion (prespres-ence or abspres-ence) or in a directional fashion (hypertrophy, atrophy, and no change), the relationship between degrees of lipodystro-phy and magnitude of body image change could not be evaluated Fourth, there remains a significant portion of variability not explained by our current model Further study is therefore needed to better assess the relationship between HIV status, lipodystrophy status, and body image and the contribution of HIV and lipodystrophy to the deterioration of body image among women

Conclusion

In conclusion, notable body image dysphoria and situa-tional anxiety is demonstrated in women with HIV

dis-Table 2: Patient Reported Site-Specific Fat Changes and Body

Image Scale Scores

Body Site Fat Change (n) SIBID-S BIQLI

Face Fat Hypertrophy (12) 2.7 (2.3, 2.9)** -0.8 (-1.3, 0.5)*

Fat Atrophy (12) 2.6 (2.0, 3.1)** -1.0 (-1.3, -0.2)

No Change (38) 1.7 (0.6, 2.2) 0 (-0.8, 0.4)

Neck Fat Hypertrophy (15) 2.3 (2.1, 2.8)* -1.0 (-1.3, 0)

Fat Atrophy (1) 3.1** 1.7

No Change (46) 1.9 (0.8, 2.5) -0.2 (-0.9, 0.4)

Arm Fat Hypertrophy (6) 2.3 (1.9, 3.0) -0.7 (-1.2, 0.8)

Fat Atrophy (17) 2.5 (2.1, 3.0)** -0.8 (-1.3, 0.2)*

No Change (39) 1.8 (0.5, 2.4) -0.1 (-0.8, 0.6)

Breast Fat Hypertrophy (18) 2.7 (2.0, 3.0)** 1.0 (1.3,

-0.2)**

Fat Atrophy (6) 2.4 (1.9, 3.0) 0.9 (-1.0, 2.0)

No Change (38) 1.8 (0.5, 2.3) -0.1 (-0.8, 0.4)

Abdomen Fat Hypertrophy (39) 2.3 (1.7, 2.8)** -0.7 (-1.2, 0)**

No Change (23) 1.3 (0.5, 2.3) 0.2 (-0.4, 0.8)

Leg Fat Hypertrophy (8) 2.3 (2.1, 3.2)* -0.8 (-1.1, -0.5)*

Fat Atrophy (24) 2.3 (1.6, 2.8)* -0.5 (-1.2, 1.0)

No Change (30) 1.8 (0.5, 2.4) -0.05 (-0.9, 0.5)

Buttock Fat Hypertrophy (8) 2.5 (1.0, 2.9) -0.8 (-1.3, 1.9)

Fat Atrophy (17) 2.3 (1.9, 2.7) -0.8 (-1.2, 0.2)

No Change (37) 1.9 (0.7, 2.4) -0.1 (-0.8, 0.4)

Note: Body Image Scale scores reported as Median (IQR).

**Denotes significant difference between group medians (p < 0.025) as

determined by Wilcoxon rank sum test comparing fat change group to

"no change" control.

* p ≤ 0.05.

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ease and particularly among HIV-infected women with

lipodystrophy The detrimental effects of antiretroviral

therapy-associated lipodystrophy on body image may

contribute to non-adherence among HIV-infected female

consumers Universal efforts by HIV medical caregivers

should be pursued to increase recognition of body image

issues in the HIV-infected population so that timely and

appropriate intervention and support may be provided

Methods

Participants and setting

The study protocol was approved by the University of

Cal-ifornia, San Diego Human Research Protections Program

prior to study performance HIV-infected subjects were

recruited from an academic multidisciplinary adult HIV

clinic and via HIV community centers in San Diego

Con-trols were recruited via another study evaluating bone

density in women Informed consent was obtained prior

to any and all study procedures

Questionnaires

The Body Image Quality of Life Inventory (BIQLI) is a

clinical survey instrument used to assess how an

individ-ual's body image impacts his or her life The BIQLI uses a

7-point response format ranging from very negative (-3)

to very positive (+3) effects of body image on 19 life

domains [12,38] The nineteen-item BIQLI is internally

consistent and has been demonstrated to converge

signif-icantly with multiple measures of body-image evaluation

as well as with body mass The BIQLI is valuable for

quan-tifying how persons' body image experiences affect a

broad range of life domains, including sense of self, social

functioning, sexuality, emotional well-being, eating,

exer-cise, grooming, etc The BIQLI is scored as an average

numeric score of the 19 items where a more negative score reflects a more negative body image

The Situational Inventory of Body-Image Dysphoria (SIBID) is an assessment of the frequency of negative body-image emotions across specific situational contexts This inventory asks respondents how often they experi-ence body-image dysphoria or distress (according to a numeric range of 0 (never) to 4 (always)) in each of 48 identified situations in both social and nonsocial contexts related to such activities as exercising, grooming, eating, intimacy, physical self-focus, and appearance alterations Research has confirmed that this is an internally consist-ent, stable, and convergently valid measure of body-image affect that is responsive to body-image therapy [39-42] Recently, a 20-item short form of the SIBID has been val-idated and found to correlate highly (r > 95) with the original longer version [43] The short form of the SIBID (SIBID-S) was used in this study The SIBID-S is scored as the numeric mean score of its 20 items where a higher score is associated with increased body image dysphoria

In addition to the above questionnaires, subjects were asked to identify the location of their body changes, and

to state whether others noticed their body changes and whether they felt that their disease status was revealed to strangers based on their body changes

Study procedures

After study procedures were reviewed and informed con-sent was obtained, subjects were asked to answer the self-administered questionnaires A physical examination was also performed by one of two study physicians to deter-mine presence or absence of lipodystrophy (with good

Table 3: Multiple Regression Analyses on Body Image Measures and Selected Patient Characteristics in the Entire Cohort

Dependent Variable: BIQLI, R2 = 0.15, whole model p = 0.001

Self-reported body changes due to any chronic illness (absent) -0.29 0.15 0.06

Dependent Variable: SIBID-S, R2 = 0.17, whole model p = 0.0004

Self-reported body changes due to any chronic illness (absent) 0.45 0.11 <0.0001

Note: The reference group is presented after each variable in parentheses Higher BIQLI scores indicate higher body image quality of life; higher SIBID-S scores indicate higher body image dysphoria.

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inter-physician concordance demonstrated in our prior

study [8]) Subjects were also asked to categorize

them-selves as having lipodystrophy or not and to identify

where fat atrophy or hypertrophy had occurred Among

HIV-infected subjects, additional data including most

recent CD4 count and HIV viral load were also obtained

from the medical record

Response coding

Racial response categories included: white, black,

His-panic, Asian, or other; for the purposes of regression

anal-ysis, these groups were collapsed according to white or

non-white origin Self-reported lipodystrophy status and

clinician-determined lipodystrophy status were coded as

present or absent HIV disease status was coded as present

or absent AIDS status was coded as meeting AIDS

diag-nostic criteria or not Sexual orientation was coded as

women having sex with men (heterosexual) or other For

regression analyses, age in years was represented by

dec-ade of life and CD4 count was coded per 100 cells/μL HIV

plasma viral load was log10-transformed prior to analysis,

and specimens reported as "undetectable viral load" were

coded as 400 copies/mL Patient reported body site

changes were coded as no change, fat hypertrophy, or fat

atrophy Whether others noticed a given subject's body

changes and whether the subject believed that their

dis-ease status was revealed to strangers based on their body

changes were coded as yes or no BIQLI and SIBID-S scores

were not modified

Statistical analysis

Patient groups were compared according to selected

meas-ures using chi-square statistics for categorical variables

and the Kruskal-Wallis rank sum test for continuous

vari-ables Multivariate modeling of BIQLI and SIBID-S scores

was performed entering HIV and lipodystrophy status as

covariates in order to determine the association between

HIV and lipodystrophy status and body image scale

scores Body site specific comparisons of mean SIBID-S

and BIQLI scores according to patient reported change

(no change, fat hypertrophy, and fat atrophy) were

per-formed using Wilcoxon rank sum pair wise comparisons

between fat change groups and the "no change" group

using p-value < 0.025 as the significance level applying the

Bonferroni correction for multiple comparisons [44]

Multiple linear regression models of BIQLI and SIBID-S

scores were subsequently performed among the entire

cohort (entering demographic variables) and among

HIV-infected women only (entering site specific variables with

potential associations, defined as p ≤ 0.05) Statistical

analyses were performed using JMP 5.0 (SAS Institute,

Inc., Cary, NC)

Competing interests

The author(s) declare that they have no competing inter-ests

Authors' contributions

JSH conceived of the study, participated in its design and performance, and drafted the manuscript KB and RS par-ticipated in questionnaire performance, data collection, and data analysis WCM, SH and DL participated in sub-ject recruitment, physician evaluations, and helped to draft the manuscript All authors read and approved the final manuscript

Acknowledgements

We would like to thank the study participants, and the Owen clinic and staff for their generous support and help in performing this study.

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